When will I see you again ? (Doctor Doctor)

Since my last update a lot has happened to our world. I had my last face to face consultation on February 11th, there was talk of a virus in Wuhan province, the Diamond Princess cruise ship was docked in Yokohama but it all seemed unreal on the other side if the world.

For the first time since diagnosis day, my consultation was with Mrs Cruickshank, we hadn’t met since she briskly uttered squamous cancer cells, sorry better get a scope up the nose! She greeted me this time with nice to see you again you’re looking very well did you have an NG tube?So I replied yes I did, to which she replied “jolly good women do better than men in that respect”. So then down to business quick feel of my neck, no camera, just a piece of gauze around the tongue and yank. All looking excellent no reoccurrence everything looking nice and pink all healthy. See you in 10-12 weeks.

So we set off for our usual spring trip to Spain, looking forward to getting lots of cycling and walking in. Maybe the first clue should have been 2 hours from home, a text message from Brittany Ferry’s sailing delayed 24 hours due to bad weather, we carried on as hotel was booked for that night and too late to cancel. That night met up with friends Emma and Paul from Isle of Wight Paul had tonsil cancer 3 years previously, a friendship from the cancer U.K. site. Booked another night in hotel enjoyed a day in Portsmouth had coffee with Lori another head and neck patient who I met via this blog. There is a point to all this which I will address later. Then a phone call at 2000 ferry going now at 0100 so off to the port wasted a night in hotel but in scheme of things it’s only money.The crossing was pretty rough but arrived 27 February and drove straight to apartment.

Things just as we had left them. We managed a few bike rides then on 13th March we knew things were getting serious Spain went into total lockdown and over there lockdown means lockdown. Only one person out at a time and only for specific reasons supermarket chemist or bank. Luckily we have a balcony and a large sun terrace. We didn’t get out again as a couple until the 2nd of May (the day before we drove home) and that was only for an hour’s exercise, with the police patrolling the streets. During this time it had become apparent that cancer patients were beginning to struggle.

Instead of cafe con leche overlooking the beach its coffee on the ledge looking towards the beach from the sun terrace .



Through my blog, the cancer U.K. site and the Macmillan forum I have made many friends who today nearly 2 years on we are still in touch with, plus I made local friends via treatment in the radiotherapy waiting room which became a second home for 7 weeks.

I began to get a feeling when reading posts from new people that covid -19 was impacting on how fellow cancer patients were being treat. Not mentioning specific names but a few of us started our own self support group for a few newbies to help them in their experiences. Of course I am still maintaining activity on Cancer Uk and Macmillan sites. People really have suffered during this time, so my heart goes out to anyone reading this who have or are or just starting treatment I do hope my blog and links to others can help you.

Best advice I can give anyone is don’t be afraid the treatment is hard, the recovery can be long but it is doable. Support is out there, either on the forums,reading our blogs, sending questions only too happy to help where I can. Anyone out there don’t struggle, if pegs are not being offered due to risks associated with covid-19 there is always the NG tube, it’s not that bad, it saved my life. Painkillers; the clue is in the name, do not suffer, pain will always surprise you usually on a Friday night when you think everything’s going fine. So talk it over with your oncologist beforehand, make sure you have them either to hand or a prescription. There’s nothing worse on a Friday night than crying until Monday when you are next at hospital. Food supplements they do vary from disgusting to well disgusting, but once again get ahead, ask your dieticians for samples better to try them before you need them as the tastes do vary. Personally Ensures beat Fortisips marginally and vanilla or banana my preferences. So have some in ready for when you can no longer eat again. Get your dieticians to prescribe them.

What’s new with me? I never thought back in the early days and months of recovery that I would sit here and type these words my mouth feels almost normal. I would say there are moments in the day I would say that I have 95% saliva, nighttime I still use 1/2 an xyimelt. I regularly get 8 hours sleep wake for sips of water but not enough to disturb me. I can now eat a packet of crisps, this week I progressed to cheese and onion as well as plain! Meat is still an issue, some I can eat some I can’t , Rib eye is fine as long as it is rare. Now I can do home cooked mince again, another progress. Casseroles some days ok, pork unless it’s in sausages is too dry. Bread is ok toasted, or if a sandwich dipped into soup. Chicken is getting better, this summer I have managed to eat sweet chilli chicken thighs cooked on a b b q again progress. Chicken breast still too dry unless smothered in gravy. Most soft fruits I am fine with so that’s a big change from my last blog, most vegetables are fine, salads (particularly lettuce) are difficult it still sticks in my throat. I have tried a sip of wine and gin and tonic not ready for those. Not being a drinker before, not drinking is not a problem for me but I know plenty who can enjoy the odd tipple so don’t despair.

I started this piece with a trip to see my ENT consultant, so the above title is apt. I was due the 26th of May at Pontefract but due to covid-19 this was changed to a telephone appointment. It’s strange speaking to your ENT consultant as they can only go by what you say. This time it was Mr Gunasakharan my usual consultant, he asked about our trip to Spain. I asked how were all the staff and consultants coping, to which he thanked me for asking. As he said to me I am now in the 18-24 month period where reoccurrence is highly unlikely, but we hoped my next appointment is a face to face as it’s reassuring to hear the words from the expert it all looks clear. I did ask for a blood test for my thyroid checking this a a must for any head and neck cancer patient as at least 50% of us to on to developing thyroid issues due to radiotherapy. Its not a major problem, easily sorted by thyroxine. I went to Pontefract hospital which is a covid clean hospital, I was seen very promptly, in and out in less than 5 minutes, the hospital was very very quiet. Rung Macmillann nurse as per instructions for the results and all looking good, within normal parameters. So me being me I asked for the numbers for my records. Last year my T.S.H was a1.87 this year 1.68 acceptable levels 0.4 to 4.00 so ok at the the moment

I also want to add I was told even though I have had a telephone consultation if I had any problems to ring either the Macmillan team or his secretary we mustn’t get complacent,the consultants are trying to protect us as well as themselves ,but not at the expense of us worrying.We know our own bodies, and I wouldn’t hesitate if I needed to be seen in these difficult times.

I often get asked how’s my hair ? Proof that it does grown back

The question I get asked the most is what do I need to be ready for treatment. This list isn’t a definitive one but it helped me with a few additions from others:

Soft toothbrushes Curaprox Amazon.

Duraphat toothpaste prescription

Humidifier Amazon cool mist approx £25

Nebuliser my hospital gave me one

Boxes and boxes of tissues.

Lip balm (non-petroleum jelly)

These are all on prescription you may be given some, all or none

Gelclair for ulcers,caphosol mouthwash, difflam throat spray,co codomol 30mg/500.if you need it oramorph or a longer lasting fetynal patch, or longer lasting m s t morphine.Don’t be scared you are using them for pain not pleasure.neck cream I was given sobrederm many use Aloe Vera gel.Always ask your team avoid anything too scented keep it simple for baths and showers.Plus all the opiates do make normal loo functions difficult so make sure one day one of treatment either movicol or laxido is prescribed.Another point if you don’t qualify for free prescription s once you have a cancer diagnosis you qualify for free prescriptions for 5 years so download or ask for the exemption form in the meantime save all chemist receipts.You will end up with a cupboard full of the various lotions potions and tablets

Above all a positive mental attitude

Holding back the years.

Hard to believe on the 14th of January this year 2020 it will be one year since Dr Sen gave me the piece of paper with the words no sign of any FDG take up in the pet ct scan, which equated to no signs of any cancer in my body. Well a year has passed since I last saw Dr Sen, he now wants to see me on an informal basis once a year until I reach the magic 5 years. It was good to see him at Leeds cancer centre and he is very pleased with my progress and also impressed at how many views over 13,000 worldwide the blog has reached in the last year. We chatted about the rise in HPV driven cancers, as I am also noticing more people contacting me in the last 6 months. At any given time I have at least 20 people in varying stages of treatment and many more of us having successfully completed treatment and on the road to recovery.

One comment I did make was the fact that everyone who comments to me, all have the same gripe; why are they told in a matter of weeks you will start to feel normal, so here’s hoping the parameters will eventually be changed along the lines of some people may feel normal in a matter if weeks, many will take longer. Unfortunately it’s not a one size fits all recovery, there is no magic tablet we can take.

As for me I still have a 20 min lunch time nap most days, I have finished acupuncture treatments for now as I feel they did their job in kick starting things.

Going forward what’s next, well according to the NHS, when I reach 2 years post treatment, what I have with regard to saliva output, eating and general well being is normally as good as I will be. However recent studies in the USA are extending that period to 3 years so that will be interesting to see.

Top tips which I have put in earlier posts, but people keep asking for them.

Make sure you get prescribed Duraphat toothpaste which I need for rest if my life.

Find a soft toothbrush I use Curaprox 5400 individual bristles. amazon sell them.

A humidifier for bedroom I also found useful during and after treatment, mine was a Cool mist brand name again Amazon.

Your hospital should give or loan you a nebuliser, you can use plain boiled water if the saline dries you out, I used mine when mucus was at its worst up to 6 times a day.

Before treatment sets in and makes eating hard, try and bulk up, it’s almost always inevitable their will be weight loss, purely because it’s our mouth and throat area that takes a battering from chemotherapy and radiotherapy.

Ensure, Fortisips or whichever high calorie food supplement your dietician prescribes they aren’t nice but you do benefit from the extra calories. I started diluting them with water. Extra bonus you get extra hydration at the same time.

After treatment finishes keep a record of what you are eating and drinking it helps you and also the dietician. I was told I needed a minimum of 2000 calories and 2 or 3 litres of water in first year after treatment.

Dry mouth; sorry imagine your worst every hangover mouth! Well you may have that every day for a while but forewarned is forearmed. I still use half an Xylimelts tablet, pop it in your mouth before bed. It helps me to sleep so that I get at least 8 hours with odd sips of water during night. I get them online from the mouth ulcer company, just keep them away from pets as they are poisonous to dogs and cats.

My eating is almost back to normal now, I still can’t eat anything spicy, it may come back it may not. Don’t be surprised if your favourite foods have been replaced by things you didn’t like pre treatment it seems common among fellow sufferers.

What got me through treatment was positive mental attitude, cancer wasn’t going to define me and I would like to think that’s the case. John and I now look at it as a blip in our life. On a plus side we’ve made many friends and acquaintances through this blog and the cancer forums that I will continue to support as long as someone out there needs me. The blog will continue to be updated as and when I have something new to say or I have found out an interesting fact.

Christmas was a lot more hectic than last year, Christmas Eve buffet was for 13 of us and Christmas Day Lunch 10 of us all at our house.

See below for the tribe photo

How did I cope, well it was organised with military precision, lots of lists and some delegating. Food wise it wasn’t my best day, meat can still be difficult to eat Pork and Turkey just didn’t want to go down. Plus I started with a cold a few days before the first proper cold since treatment began in July 2018. When talking to Dr Sen he did say colds will linger longer due to immune system being compromised by the chemotherapy, so it’s a point to bear in mind. This year we both had the flu jab, I couldn’t have it last year due to pet ct scan not being until January, I wasn’t allowed to have any live vaccines.

Well what’s next for us: Spain is beckoning so will soon be back on our bikes.

Last Christmas

Well where has that last 12 months gone, quite scary I’ve just recently read last years posting and realise how far I have come. Last year I was happy to be eating relatively ok, it’s only when I read the article back I can see how I have progressed.

Don’t get me wrong I still have bad eating days, Thursday, Friday and Saturday this week was dire. But yesterday rib-eye steak, home made chips and roast vegetables including what is now my all time favourite aubergines. Today mashed swede and carrots, savoy cabbage and sausages cooked in a mushroom and Pedro ximenz sauce (closest I get to any alcohol these days). Thoroughly enjoyed both meals, although tomorrow may be a different tale.

Weight wise I’ve put on just over 7 pounds from last Christmas, which is fine I have now stabilised. Thanks in part to cycling and no longer eating adult sized portions most days.

John and I would like to wish everyone a very Merry Christmas and a healthy and happy New Year, especially all the wonderful NHS staff who work so tirelessly day after day including Christmas.

The blog has now had over 14000 views from all 4 corners of the world and many of you have passed comments back to me. I hope I have replied to each and every one of you and many of you still message me for hints and tips, which I am only too pleased to help. Ok we are all different and progress at differing stages but hopefully we all get there in the end.

Christmas last year due to family illness was a quiet one, just John and I with an Aldi turkey roll. This year we have 11 family members for Christmas Eve tea and 10 for Christmas dinner. I am hoping its a good food day, but at least I am still here alive and kicking raring to go.

Early January brings my long awaited appointment with my oncologist Dr Sen at Leeds Cancer centre, strangle to say I am really looking forward to seeing him. He wants to see me every January until we reach the magic 5 years. I know many of you stress when it comes to ENT appointments, maybe I am a lucky one as I don’t stress at all, in fact I look forward to a quick chat normally with Mr Gunasecker at my local hospital.

I have stopped acupuncture sessions for now, I have had 6 in total and I do think they have helped my saliva, ok it’s not normal but it’s no longer as thick and sticky as it was. Jo my acupuncturist always said 4 and see how it goes I think I’ve probably gone as far as I can for now with it.

I don’t take any medication apart from one amolodapine tablets which I took prior to treatment, and 10 mg of omaprozole for acid reflux which is a well known side effect of our treatment. I still tire easily, a 20 minute nap around lunchtime sorts me out. Most days I can walk to our shops a feat I couldn’t do last year, plus I have been lucky with my cycling I can bike a good 55 /60 km which both John and I are pleased with. Sleeping is no problem I regularly get 8/9 hours solid sleep. Reading has come back to me and I can potter in the garden, knit and crochet so all in all everything going great.

Things aren’t perfect, my mouth can go as dry as a bone for no apparent reason, I still can’t drink tap water so it’s bottled water every day. For some reason I don’t get a runny nose the nasal mucus seems to gather at the back of my throat, although I can sneeze, strange but true. I still miss most fruits, ok I can do bananas, bananas are so boring ! Much to Johns chagrin my body thermostats not quite right as far as the cold goes, so I turn the thermostat up he turns it down ! My gums are receding quicker than I thought they would, our dentist Amita is keeping a close eye on them. Last week I needed a small filling first one in years, my oral hygiene is excellent the dentist says, but it’s a side effect of dry mouth no mattter what I do it’s inevitable that I may need more dental work, but will handle that as and when.

Thinking back to last Christmas I compared my mouth when waking to be like having superglue in it, so I suppose progress can be measured by now when I wake it’s like having the glue we used as children just gloopy, here’s to next Christmas being almost normal. I do know I will never have 100% saliva due to my uvula ( dangly bit at back of throat )melting during treatment, which also acts as a saliva gland shooting saliva down the throat when we talk,and yes I talk a lot !

No matter where you are in treatment, just look at me and if I can do it anyone can .

I have come across a very informative website http://www.throatcancerfoundation.org defiantly worth a look.

Plus a friend who I have made on the Macmillan site has her own blog about her brush with base of the tongue cancer

https://todaymycoffeetasteslikechristmasincostarica.org

Onwards and upwards.

Yes I’ve had my hair cut ,it was looking scraggy so off it came.

It’s my life

Keeping in touch with the theme of song titles; as Bon Jovi sang Its my life it’s now or never, I ain’t going to live forever, I just want to live while I’am alive. Well I can say both John and I are almost back on track. We have just returned from latest trip to Spain and I did the final cycling challenge that I set myself back in the dark days of chemo radiotherapy.

We cycled from sea level over a mountain down to sea level and back up over the mountain down to sea level. Total of 66 kilometres with a stop for lunch so definitely living our life’s.

I am now November 2019,15 months post radiotherapy and still have periods of dry mouth and most days a quick 20 minute power nap.

Whats new: I am eating better, chicken has finally appeared on the menu which does help. I still can’t eat chicken breast but leg wing or thigh meat is ok, better with a gravy or sauce. Curries, chilli or anything spicy is still a step too far for my delicate mouth. Once again fresh mince no matter how fine, no matter which meat beef, pork, lamb or turkey still sticks, but anything processed like lasagne is perfectly fine, strange but true.

I have met and been in touch via my blog, Cancer U.K. or Macmillan sites lots of new friends and we all have our own idiosyncrasies so if you are reading this don’t think everything that I’ve been through will apply to you, some will and some won’t. I just hope I can continue to inspire fellow sufferers. Please don’t be afraid, I am a true wimp and if I can do it anyone can. I still repeat please keep off Dr Google the facts on there are not regulated and will scare you. Positive mental attitude got me through it and am sure it will help you.

A typical day for me if we are away is:

Breakfast usually porridge, fruit juice, herbal tea.

Cycle or Walk a few hours neither if which I could do much of a year ago now usually cycle at least 30 km or walk 10 km.

Lunch either tapas or if in and mouth feeling ok crackers and cheese!Definitely not eating those a year ago. When at home soup or scrambled eggs on toast.

Afternoons if away chill out and read, if at home try and garden plus do boring things housework included.

Tea again pretty boring but beats Ensures (lol) Fish, lamb (my favourite), pork usually with roast vegetables potatoes or lasagna. Rice is still beyond my palate.

Snacks very rare, I can manage a few plain crisps, a little chocolate, if I have a biscuit I must dunk in coffee.

Oral care is still a big part of my day. I can now use an electric toothbrush but still have my trusty curaprox ones at hand. I have been told duraphat toothpaste will be the only one I will be able to use for ever. Bioxtra mouthwash have tried others but all still too strong, plus inter dental toothbrushes to get any waste food from in between my teeth. I am on 3 monthly ENT appointments and visit my dentist every 3 months, both are very happy with how I am progressing.

I also pay privately for acupuncture for dry mouth, is it worth it? I think it is but you have to believe in alternative therapies.

Not everything is rosy.

It’s frustrating how one day or one week I can eat things perfectly fine then lo and behold the next week the same things just won’t go down! Our shopping bill has increased as some days I have to throw food away and cook something else. Likewise my body thermostat can’t cope with the cold as it used to, thankfully I can cope with temperatures comfortably up to 35 degrees. So once again our heating bills have increased. Ok it’s a small price to pay to be alive, but it’s all the little hidden things that soon mount up.

Loss of my uvulva.

For those who missed that in an earlier blog I didn’t discover until a year post treatment that mine had shrunk to a stump, as it accounted for producing copious amounts of serous thin saliva which I won’t ever regain. All I can do is try and encourage my remaining saliva glands to make more. Hence the copious amounts of water I still consume.

Explanation of what the Uvulva does.

Function: During swallowing, the soft palate and the uvulva move together to close off the nasopharynx and prevent food from entering the nasal cavity. It also produces an abundant amount of thin saliva which serves to keep the throat lubricated. It has a function in speech as well, so I will never be able to roll my rrrrrs, no big loss.There is one plus point I can never keep John awake as I can no longer snore ! However John says I still make noises which keep him awake.

When I reflect back to this time last year I have come a long long way eating wise plus I can enjoy a cup of coffee now. Personally I haven’t had the inclination to try alcohol, I was never a big drinker so no loss there. Some of the people who have been through treatment with me are now able to enjoy a drink every now and then.

Nighttime: Now I regularly get over 7 hours solid sleep, I still use 1/2 a xyimelts every night; (The mouth ulcer company ) online they really do work for me, yes you need some saliva for them to do so.

Medication: Now i take one omaprozole for acid reflux my usual blood pressure tablets, plus the occasional paracetamol.

To anyone starting this treatment it’s hard, recovery time varies, not one person who has been in contact with me felt anything like normal in the 2 weeks that all the consultants seem to advocate. But we all get there, some just take longer than others. I was lucky John sort of bullied me into our first trip back to Spain in October 2018, which I admit wasn’t easy but it did do me a world of good, leaving the bubble of my secure home environment.

My hospital visits are for the next 2 years every 3 months or so, the pressures on our NHS are such that sometimes I have to go a few weeks longer. A question that a lot of people ask me is do I get anxious before each appointment. I reply NO from day 1 of meeting Dr Sen. My oncologist I had every confidence that the treatment would work and the cancer would go and I still carry that attitude with me. People say to look at me now they would never know what I went through last year. The only onward difference is I go everywhere with my water bottle, and if you look closely at my neck where the enlarged lymph node was the telangiectasia is visible. Dr Sen did warn me that I would have a permanent reminder of him every time I looked in the mirror. It doesn’t bother me in the slightest, I know a few people stare and wonder what the marks are, so I tell them !

Ps. still no teenage snogs, everything else back to normal. Maybe I will get one for Christmas! Better look for some mistletoe.

Pretty Good Year.

As Tori Amos sang, it was a pretty good year and it was; as I am still here!

It was exactly one year ago when I had my last session of Radiotherapy, as you can see from the photos below I’ve come through it pretty well unscathed.

Yes I still have issues with dry mouth and sticky saliva, meat especially chicken is still difficult and oral thrush still plagues me due to lack of saliva, but all the above are better than the alternative.

The top photo is a no holds barred shot of how I looked at my worst the 3rd photo was taken in our garden this week. So to all of your reading this I’ve put them in to show you there is light at the end of the tunnel.

One of my worst fears that I voiced at the beginning of my blog the night before treatment started was I was scared would I still be me Hazel, would I change. I think this fear is a rational one and one that most of you will have thought it as well. I can categorically state in my case I am still me! Not a new me! Not a different me. I am still me. I think John and rest of our family hopefully agree with me. I haven’t gone morose, soft or anything I am still me, sometimes a demanding pain in the neck yep that’s me. John described me this way “you still want to do everything you did before cancer, things that might be problematic are an annoyance and are not to be accepted for ever”.

Quick update medical wise, 10 days ago I finally got to see the back of my throat! All swelling had gone and with some manipulation of my tongue I could see the back of my throat biopsy site but something was missing! I called John and asked him to open his mouth and then look into mine. As I thought my clacker or dangly bit or to give it it’s medical name Palatine Uvula had dissolved. So a little bit of Dr Google (advice still applies, keep off it for diagnosis) I got an answer as to why my throat is drying out when I speak. Like most of you reading this I had no idea what it did! Well it’s the source of thin saliva that is directed to our throats when we speak, plus it helps to move food down the throat. Umm no amount of acupuncture’s going to restore that, so now I know what I am dealing with it’s just a case of I have to get in with it. What I do want to know though at my next appointment with hopefully Mr Gunnaaseca is why haven’t I been told that it had melted!

My weight is stable at just under 10 stone, eating wise as long as I plan I can manage pretty much most meals (but not spicy). The main difference is food rarely gives me any pleasure, it’s rare that I say after a meal that I enjoyed it. I still from time to time have to have water to get things down, I can drink a can of pop, rarely coke, sometimes Fanta Orange, using a straw is much better than drinking from the can or a glass. I still haven’t touched a drop of alchol for no other reason other than I rarely drunk previously and have no desire to stress my mouth out any more.

What do I miss? Its the little things, making a sandwich and nibbling on a bit of meat or cheese, if I forget and try it’s deffo reach for the water quickly. A nice bacon sandwich but nope the bread combined with bacon is just a step too far, crisps I adored a packet of Walkers plain, nothing fancy, ok I can eat them but the time it takes and the suffering in my mouth it’s not worth it.

Friends we’ve made some great ones through my cancer diagnosis there’s a small tightly knit band of us that regularly keep in touch. 3 of us plus other half’s meet up for food and a chat, our next meet will be just prior to Christmas. Its good to have what we call cancer buddies as we exchange tips and compare notes, plus John gets to find out from their wives point of views, I throughly recommend to anyone starting this journey don’t wrap yourself in a bubble, as you all know me by now I am not a shy retiring wallflower even through treatment I was the chatty one, ok I knew when people didn’t want to and respected that but Neil and Jo along with Jason and Michelle were happy to chat and we’ve gone from there.

TOP TIPS FOR NEW PEOPLE.

Curaprox soft toothbrushes invaluable for keeping teeth clean.

Duraphat toothpaste on dental prescription.

Buy a humidifier especially for night time mine was a Cool Mist from Amazon.

Your hospital should loan you a nebuliser you can use plain boiled water as well as saline.

Drink as much water as you can it really is vital keep a daily check of how much you are drinking especially later in treatment and first weeks of recovery alongside keeping a track of calories aim for 2000/2500 a day easier said than done.

Most if all keep a smile and a positive mental attitude, if I can do it honestly anyone can.

Please keep in touch if anyone wants any advice I am only too pleased to help.

To John, Nicola, Mel, James and all our extended family and friends too numerous to mention not forgetting all the NHS staff thank you once again.

Needles and Pins

Today 31 July 2019; I had my first acupuncture with Joanne at John Cox Physiotherapy centre at Upton. I have 3 more sessions booked in to try and stimulate my saliva glands into producing more saliva. Too early to pass comment, although my mouth does feel more moist so fingers x. It didn’t hurt, just a quick prick and in went the needles, it sounded like a nail gun but gentler. Took a few minutes then I was left alone for 20 minutes just lie still and chill. Will report progress on next blog.

I have been doing a little research online, again only recognised sites, details below they may help or at least explain scientific advice a little clearer.

https://makesensecampaign.eu/files/documents/Make-Sense-Campaign-Toolkit.pdf

https://www.bahno.org.uk

The top one also has a small section of recipes and some survivor’s story’s, the latter one is the official British Head and Neck oncologist site where you can access the latest news and views from the professionals.

Girl on a bicycle

This girl and some friends got on their bicycles yesterday for our planned charity bike ride. Oh yes it rained on our parade; torrential rain all day long, but we did it.At the moment fund raising stands at £1100 for Leeds St James Head and Neck cancer unit, so very pleased with that, thank you to all who have donated.

http://www.justgiving.com/fundraising/Hazel-Turner24

I will be updating in my anniversary at the end if August with more details of ongoing issues.

Thursday had ENT appointment at local hospital, once again I saw a locum who insisted in the camera up the nose and down the throat. I still fail to understand when I see the ENT consultant he just moves my tongue looks inside and feels my neck pronounces all is well and off I go. With the camera up I end up with extra mucus and a cough for weeks, I do ask but each time get told they have to do it.

This week I am trying an acupuncturist to see if my parotid gland can be stimulated, so will report back on next blog.

Addendum thank you to Elaine Harper for her very kind donation ,Elaine email me if you want to chat .

It was a very good year

Yes it was a very good year as the late Frank Sinatra and Robbie Williams sang, you may think a strange title but in many ways it was.

The photos above are from our ruby wedding in June, which to be honest this time last year I didn’t think I would see, because when you hear the big C you automatically assume the worst.

Ok I got the one thing that we all dread the big C. I also got the all clear, met some wonderful people along the way, many who are now firm friends forever. John and I have widened our circle of friends and even found out new things about each other.

The photo with me and the 2 guys Neil and Jason who were my radiotherapy partners. It was great we could all meet up in happier circumstances.

Yes I have come a long way and still have a long way to go, but looking back to the D D. Diagnosis Day to present day I have experienced the highs as well as the lows.

On Saturday 27th July which is also World Head and Neck cancer day John and I along with Neil and Jo Schofield are doing a charity bike ride. John and I in aid of funds for Leeds Cares and Neil and Jo for Macmillan. Neil and Jo are 2 of our new circle of friends from our common theme of Radiotherapy.

Update on me, weight is being maintained at around 9 stone 10 lb which is good. I keep trying different foods with limited success.

Beef of any variety apart from mince is still very much a no go, the effort eating it isn’t worth the limited calorific value. Although this week I have had success with lamb. My current favourite is oven roasted vegetables as an accompaniment to most dinners; courgettes, aubergines, garlic, onions, tomatoes drizzled with herbs and olive oil yummy. Salad is still a major issue. It just doesn’t want to slide down even with water. Just one if the many variables that us head and neck cancer patients have to face on a day to day basis. It seems that bread and chicken are 2 of the common foods that just won’t go down our throats. Toast I can eat all day but plain sandwich is still a step too far on most days.

Although when I look back like I’ve said before to the early post treatment days I am eating like a king compared to then. So don’t despair if you are in the early stages there is hope.

Cycling

Just returned from quick trip to Spain, intentions were to cycle every day but the African plume heatwave put paid to that, although I did manage 175 km in total.

Cycling is still far easier than walking for me, radiation tiredness is still around, usually a quick 20 minute nap and I am fine. Today I pushed myself a little too far at home, nice day walked to the shops, several of them, the bank, chemist and library finishing up in supermarket. But I had to phone John to come in the car and get me as I wouldn’t have made the 3/4 of a mile walk back. So yes I’ve come a long way but now even 10month post radiotherapy I am still not 100%. One thing to remember we are all different some of us respond quicker than others to each stage, as I often say baby steps is the way to go.

Yes I sat on the beach what you can’t see is the huge parasol that I was under and any colour I have is fake tan, but plenty of factor 50 on my neck and factor 30 everywhere else I was perfectly fine. If I can cope with an unexpected heatwave I feel ok in any weather as 42 degrees in the shade was the highest we had. So just be sensible and life can continue as normal, ok I haven’t had an alcoholic drink but I was hardly a drinker before this so no loss to me. I did try an alcohol free lager which was ok dried my mouth out though.

Thank you to everyone who has generously donated to our charity bike ride, if anyone would like to donate the link is.

https:/www.justgiving.com/fundraising/Hazel-Turner24

This blog has now received over 8200 views since I started it last June , far exceeding my expectations as originally it was a way of me being in control of an uncontrollable situation,and a way for family and friends to hear what I was going through.Now I have had people from all over the world from Australia to Zimbabwe ,and had comments and questions from everywhere.So I hope it continues to help others

Without you.

This chapter is primarily to thank our other half’s who suffer in mostly silence on our trip with cancer. As the first line of the above song title goes Can’t live if living is without you; John my hubby of 40 years next week I know this has hurt you as much as me and all the other half’s and families out there. We know you are fed up of us saying my mouth hurts, my teeth aren’t clean and no I can’t possibly swallow that tiny morsel of meat, but hey give me a sticky toffee pudding with ice cream. What do you mean I can’t have custard as well! Then 2 days later when you come back from yet another trip to supermarket with a bag full of sticky toffee puddings we say can’t eat those they set my teeth off ! We realise it’s frustrating when one minute we can eat something then the next day not a chance. Like John says it’s an expensive cancer to get! Food wise, I seem to waste a lot more than I ever did. A good tip is think back to food of our childhood, cheap cuts of meat cooked long and slow, so for now forget curry’s and chilli, if you are having rice make it as a pudding otherwise it’s difficult to swallow.

Likewise family and friends, we totally understand that you don’t understand how we feel and no matter how many times we try to explain waking up after your worst ever hangover with a mouth like the bottom if a budgies cage that’s how we feel all the time mouth wise.

The other common theme is the delicate matter of kissing! Yes it’s awkward to bring up but I feel it needs addressing. Cuddles hugs and other things are fine but the delicate or passionate act of kissing just doesn’t happen. Don’t get me wrong, I fully appreciate Johns position. If roles were reversed I would feel the same. When you think where it all started my tonsil and the brutal treatment I went through in my mouth and to be honest I am still having side effects, so would I want to kiss it no.We laugh and talk about it plus I have been in touch with others who are going through treatment or like me in recovery and we all say the same. So if you are reading my blog either as the patient or family member and you’ve been wondering are you alone in this, nope it’s a common thread. I am sure things will get back to normal but it’s a thing that I felt needed addressing however trivial it may seem.

Radiation tiredness could have a chapter all in its own ! Yet again it’s hard to explain. It’s like a wave, one second you are fine the next wham it’s like being hit in the face by a barn door. In my case a 20 minute nap usually sorts me out. Please don’t get me wrong I realise How lucky I am I have kicked cancers butt, stared it in the face and won unlike many I know who aren’t as lucky as me I have already lost too many friends and family to this horrible illness.

Now I am 9 month post radiotherapy which equates in time to a full term pregnancy and almost a year since the Cancer diagnosis was finally confirmed. What a lot has happened since then. I am living my life and I would say I’m about 90% back to pre-cancer levels, better than most people I’ve come across but not as good as a few. We are all different that’s a common theme you will come across.

Last night we watched Parky being interviewed by Piers Morgan and when he was asked how did you feel when the Dr uttered those words you’ve got cancer, in my case Squamous cancer cells in the lymph node, in that split second it’s either do or die I decided immediately it wasn’t going to beat me. Parky was born less than 4 miles from me and Geoffrey Boycott was born in the next village. Both are outspoken tough Yorkshire folk, both diagnosed with cancer took the same attitude as me,it wasn’t going to beat them. Sir Geoffrey had the same as me and Sir Michael prostrate cancer and both have beaten it. We breed em tough in our part of world !

Update on me, just returned from a fab week in Wales with John,daughter Nicola, son in law Mel and grandson James. We had a cottage up in the mountains. The weather wasn’t the best but we got out every day walking visiting Ospreys and looking at the area in general. I started with a cold the first proper one since treatment finished. A word of warning, it does take a toll on your general health, normally I could shake a cold off in a few days, now 10 days later it’s still there. I have to admit that my immune system is definitely suppressed so booking a trip to local GP because I want to get my thyroid checked. I don’t think there’s anything wrong but up to 50% of head and neck cancer patients eventually end up on thyroxine so I want to get into the system for regular checks, maybe they should be offered as a matter of routine, think that’s a question for my next meeting with Dr Sen.

What’s coming up next. Regular visits to ENT will continue, quick trip to Spain planned only 2 weeks this time.

Family and friends bbq next weekend to celebrate our ruby wedding and to say thank you to everyone who has been there for us. Sorry to Sue and Dave who are away but will send you photos. We have asked for no gifts because we are doing a charity raffle to try and raise funds for Leeds St James Head and Neck cancer department.

Then the big one Charity bike ride on World Head and Neck cancer day 27th July 40 miles.

I have a Just giving page set up. I would like to thank you to those followers who have already supported me and if anyone wants to contribute Please see the links below. Head and Neck cancer is one of the forgotten cancers so any help is always appreciated.

https:/www.justgiving.com/fundraising/Hazel-Turner24

Or search Hazel^s Tour de Wakefield.

While ever people are reading my blogs I will continue to update, since conception I’ve had over 6700 views which is incredible for a little lass from Yorkshire .

https://dealingwithbaseoftonguecancer.home.blog/

This is a link to a guy in B.C Canada who has just been diagnosed worth a read for a different perspective

One moment in time.

There are certain dates that are fixed in your head for personal reasons, birthdays, weddings,funerals, then there are others; places and times, JFK s assassination ( was only 5), 1st man on the moon, Elvis Presley’s death, the first plane hitting the twin towers and then in my case; that first time the word cancer is mentioned directly to you by a doctor 14th May 2018 at 1205! That was my moment and I’m sure that many of you have experienced the same. Well one year has now passed since that fateful day. So I thought it was time for an update on how I am progressing.

As you can see we’ve been to Spain for an extended stay, having checked with consultant before we went. In his words it’s now time to live your life, plus he said I am old enough and wise enough to fly home if need be.

What’s changed in the last year is a question people ask me, honestly I think I am still Hazel, it has been a life changing event but it hasn’t changed my life drastically.

I get tired easier than I used to but solve that by having a quick 20 minute nap problem resolved .

Meat can still be an issue, not the chewing action that’s fine but the fibres in Beef are especially difficult to swallow. However a rare steak is fine, unfortunately can’t have one of those every day!

Saliva is slowly returning to something like normality. I have moments where my mouth feels like what I think is normal, then again I still have super glue moments so that’s work in progress. Dr Sen did say after 2 years most time what you’ve got is as good as it gets so a way to go there.

Taste I am a lucky one in that respect I never lost taste ok I had the metallic taste for a shirt time but never the wet soggy cardboard in my mouth taste.

Weight I seem to have stabilised around the 9 st 10 lb which is fine by me. I may put a but more on but I don’t want to loose anymore as I feel I am at a healthy weight for me.

We’ve made new friends through me getting cancer, couples we’ve met at St James during treatment; Jo and Neil, Michelle and Jason, Tracey and Darren we’ve met up for lunch and keep in contact it’s good to compare how we are doing even if I am the oddball female with a “male” cancer.

Then in the Cancer U.K. forum, Macmillan forum and via this blog Nikki and Paul, Emma and Paul, Eric and Barbara who’ve we’ve met up with. It’s great to compare with Nikki because like me she is the one who got the cancer, its a 97% male cancer and 3% female so we are special. Then there’s everyone on the forums, I would be here all day mentioning them but Ian, Graham and Superman Dave get a special mention as we’ve spent many a hour debating the whys and wherefore.

One thing that sticks in my mind is if a year ago you would have said I could talk online in a cancer forum to total strangers about bowel movements I wouldn’t have believed you, nevertheless I feel even stranger recommending Movicol over Laxido as the go get for moving things along. True cancer can be a real leveller!

Of course family and friends have helped to keep me fed and amused, special thanks to Nicola, Mel, James, Dan, Faye, Liam, Lucy, Meg, Kaine, Delilah and Penelope for treating me no differently. Sue and Dave for the flowers and scarves, Lynn and Graham for being my voices of reason and sending the funny emojis.If I have missed anyone sorry you are all in my thoughts.

Last but not least John my other half, I know it’s been tough for him, especially as like I’ve just said it’s a mostly male cancer and he must be thinking why me and not him. I know he has had moments when he’s been lost as there’s nothing he could do to alleviate the pain I’ve been in. Many months after treatment finished John did tell me in the early days of recovery he felt so helpless that some days when I was shattered and in bed he would think if I didn’t wake up would it be better for me as he could do nothing else to help me. Yes I cried at that statement. But like Ian from the cancer forum says onward and upwards from here to infinity and beyond, thank you Buzz Lightyear.

I’ve learnt that each week new people are popping up on the cancer U.K. forum and also the Macmillan forum with h p v related head and neck cancers spans. I don’t have any problem with people contacting me for advise or even to rant why me !

What’s next : This I week had ENT consult, all good, camera up the nose and down the throat and heard the words no reoccurrence showing all looking good. Brilliant words to hear. Plus I was looking fit and healthy.

Charity bike ride on World Head and Neck cancer day the 27 th of July (weather permitting). Any sponsorship raised will be for Leeds Cares 1V02 Head &Neck cancer fund.

Top Tips

Curaprox toothbrush amazon made teeth brushing so easy.

Duraphat toothpaste dentist will prescribe.

Humidifier vital in early weeks when mucus and secretions start.

Nebuliser ask your hospital to loan you one.

If you need a NG tube don’t be afraid they are put in for a good reason treatment is tough recovery can be slow and you will need all the nourishment you can get.

When I look back to the first few weeks after treatment when I had a few spoons if Baxter’s consommé soup and the inside of a dinky pork pie, I’ve come a long way in the last 8 months.

Tea tonight jersey new potatoes, baked salmon roast vegetables all eaten without copious amounts of liquid maybe a sip of water towards the end.

As I have mentioned previously I will be doing a Charity bike ride with hubby John our daughter Nicola and 2 friends Neil and Jo.

I have now set up a Justgiving page please feel free to pop along and make a donation for Leeds Cancer Hospital Head and Neck research. In the words of a famous supermarket Every Little HelpThank you in advance.

https:/www.justgiving.com/fundraising/Hazel-Turner24

Good luck to everyone starting or going through treatment, email any questions. Next update will be when there’s something worth writing about.